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DS2 will have his assessment next week...(5 Posts)
...It's an SCD assessment for "suspected" autism. And I do strongly suspect he will be diagnosed with Autism sooner or later. All professionals are on board (nursery, HV, EY, etc). But I still feel as though I need a little hand-holding...
Disclosure and background: I've been able to work with a SEN support group these past few months (which is AMAZING, supportive and ever-so enlightening). Last week we were invited to the CDC where DS will be going for his assessment. I was able to ask lots of questions... and learned that DS2 may receive a diagnosis on the same day (a 2 hour appointment, with questionnaires I need to fill in beforehand). Until this, I honestly thought this would just be an initial appointment, with many more to follow. This is happening a lot faster than I expected...
I just keep wondering... what if DS behaves spectacularly well on the day - in stark contrast to his half-term several-times-a-day meltdowns... Should I be keeping a detailed diary? Videoing his episodes/examples of behaviour?
Those of you who strongly suspected your DC were on the spectrum prior to diagnosis - was your initial reaction one of vilification or did you still feel upset?
Apologies if this all seems like nonsense. As each day draws closer to that appointment, I feel more dread and worry.
Any advice would be gratefully received
I was hoping DS had anything other than autism - but suspected it was mild autism.
When it was confirmed I was really upset and I cried. I was depressed for about a year afterward as I found it very hard to come to terms with. Only recently when I see the progress DS has made with intervention am I finally back to myself.
I thought DS having aspergers /autism meant him and us could never be happy or have a normal life again but I was wrong.
Even if your DS behaves well on the day, the questionnaires are so detailed that they should get a good picture of his behaviour.
Write out a list of things you want to mention so you do not forget them
Also, find out who you can contact with further questions as you'll keep thinking of more. I was lucky as the psychologist who assessed my son gave me her email so I could check things with her quickly now and then.
When my DS1 had his ADOS he had an absolute blast; totally engaged with the therapists and was laughing his head off.
As he was usually inclined towards passive resistance I was sure he wouldn't be dx with ASD. We were sent off for 30 mins and when we came back the ADOS scores were in asd range so combined with preschool and salt reports he was dx there and then.
I was completely floored tbh as he had made such huge gains from when I'd initially raised concerns (started referrari before age 2) - but that was just his natural development trajectory and the ASD dx is completely right.
It's coming up for 7 years since dx and I'm so glad we did go that route, but, there were definitely months post-dx where I felt it was just a huge waste of time. We seemed to have endless assessments and general busy-body's but no one really doing anything to help. Once we got him statemented we were able to discharge from most services as they really weren't relevant to DS1.
Referrari?!? Referral. I sadly do not own a ferrari!
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